Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

[Countrygirl]

Hi all, just to let you know that AfME have been responding to me on the FB post about this, don't know how to do a screen shot but I'm Olivia. They replied to my comment from yesterday or the day before, (sorry time is wibbly) an hour ago about the EC trial they are funding, saying it was voted for by members. I feel I should continue the dialogue because they are still engaging, but I'm foggy!
I'll check back later

Great to see you here again @Mrs Sowester !

 

[Jenny TipsforME]

@Molly98 at one point I was also a Sunday school teacher

I think I come across as perfectly respectable, if not a bit boring, in person! I'm certainly not the criminal element that is EC's latest thing, or some sort of psychopathic Wessely-esque militant extremist.

In fact I score unusually low on psychopathy, which being a psychology graduate (and not anti psychology) is the type of thing I know about myself.

I'm also now working very part time as a researcher on a chronic illness research project. I'm not anti research or science!

What I do object to is the social injustice of misinforming doctors in this way and blocking out patient voice

In that sense it's probably not a complete coincidence that those of us getting blocked have been teachers. Miseducation is very dangerous and needs to be challenged with better information.

One of the tweets they took down was something about how it is difficult for doctors when patients come in having discussed what they may have online. I can see this is a tricky change of dynamics, but overall it is positive. From something completely separate Julia Newton shared this

https://twitter.com/i/web/status/865485604598890497

Only 7% of POTS gets picked up by GPs! But 1 in 5 cases of POTS was initially spotted by the patient themselves. I self diagnosed and then got it confirmed by tests with a cardiologist. My GP hadn't heard of it and was initially sceptical but she had a decent attitude and made the referral. Afterwards she thanked me for educating her about it. I've had discussion with other pwme who (despite having diaries evidence a clear bpm POTS pattern and symptoms) have just been insulted by their GP. Since GPs are the gatekeepers to other referrals they are then blocked from diagnosis and treatment

 

[suffolkres]

Very well said.

"And I would seriously question whether this material should be considered valid for professional training. Nobody knows what the best way of dealing with any of these problems is and yet the slides give clear advice on what to do. It is simple quackery. Decide what you think ought to be good treatment and then tell your friends how good it is, without any evidence."

Jo, the point about training and accreditation is very important. Maybe Dr Huw Thomas (new President of SWC as of 2016) - could be extended an invitation to the Invest In ME Conference so he can see what leading edge training looks like? Or even the Colloquium? At least he should be made aware and should disseminate this to his " Club"! An invitation via you might be helpful!?

 

[trishrhymes]

Was that the tweet that said: 'Learnt lots about MUS'? And had a bunch of women together, laughing? Funny how it's possible to learn lots about something that doesn't exist. I seriously wonder what kind of training these people have had, or what happened to their critical faculties.

Yes, that's them. I'm sure they're lovely doctors. Not their fault they're being sold a load of twaddle. I hope their critical faculties kick in before they do harm. I sent them 4 informative tweets. I suggest we don't bombard them with too many more, or they will take fright and block us. Feel free to click like on my posts to them!

 

[Sean]

Never ceases to amaze how such highly educated people can be so stupid and lack basic common sense.

And a moral compass.

Yeah, I think it boils down to the basic moral self-awareness and strength to not make Faustian pacts with the more malignant forces in this world.

We all have to make compromises, big and small, profound and trivial, every day of our lives. But that doesn't mean every compromise is legit or acceptable. There is a question about proportionality. There are limits.

I seriously wonder what kind of training these people have had, or what happened to their critical faculties.

Generally speaking, in my experience doctors don't make good scientists. Different mindset, different set of cognitive skills. Not inferior or less important, just different.

Doctors and the medical system are designed to apply diagnoses and treatments that are already known and understood. And overall they are very good at it. We should be grateful for that.

Where they fall down, and sometimes spectacularly, is when they are dealing with unknowns, and refusing to admit the very real limit to their knowledge and skill.

The last 50 years of ME, for example.

 

[Molly98]

I recall mention of a book called "the body keeps the score" in one of the tweets today.i have been reading this recently,I haven't fully finished it yet.. I t is really good,deals with p.t.s.d.,deep seated behavioural problems and psychological problems. It is easy to read and written from a really compassionate point of view.. It wouldn't have any relevance to a child or adult suffering from ME/CFS ANY more than it would to someone suffering from diabetes. This is a groundbreaking book in its field and hailed as such but irrelevant in this context. I think it is worth checking out these references for relevance and also to ensure parents and patients do not feel threatened by them.

I am very familiar with this book too, It is a book on Trauma and particulalry with relation to PTSD and complex - PTSD, it is for adults not to do wth working with trauma in children and is in my opinion is not helpful or relevant to ME, POT, EDS and Chronic pain in children. It got me thinking yesterday about this as I felt it was entirely inappropiate.

In a former life before a significant ME crash when I lived 'up North ', I worked with children and young people in a therapeutic capacity .

A majority of these children and young people has suffered childhood trauma and many came from socially deprived backgrounds. We are not talking suspected childhood trauma, we are talking files thick with social worker and police reports of actual documented events - domestic violence, abuse, neglect etc. A majority of these children were in the care system, residential schools/ care and foster, others had been adopted.

Last night and this morning I have tried to recall all the kids that I worked with to recall instances of what is being referred to as persistent physical symptoms or MUS and I can not recall any and some of these kids I worked with weekly over 2-3 years.

There was not one child or young person complaining of or investigated for chronic pain, chronic fatigue, none suffering from EDS, POTs and none had ME. I can think of 1 young person out of over 100 children and young person who for a few months could probably be said to be fatigued, but it was not unexplained, the YP was suffering from depression at the time, was up half the night on her phone, was eating poorly and not managing another medical condition which if not managing correctly causes fatigue.It most certainly was not ME. There were a few who complained of tummy ache or feeling nauseous when anxious or worried about something but this I condider entirely normal and common with many children. Nothing that needed the doctors intervention.

The majority of these kids suffered from pretty severe emotional problems , had extream difficulty with emotional regualtion, difficult to manage behaviour, some more complex psychological problems and some learning difficulties as a result of early childhood neglect . Some had other known medical difficulties but there was never an occasion of chronic unexplained symptoms or chronic unexplained pain or fatigue.

Given the theories being presented yesterday and EC's slide show the other week this is precicely the group of children that these MUS or persistent physical symptoms should be occuring highly in. But in my experience they did not. Now this is only my experience , for some unknown reason it may be completely atypical, but I can not think why it would be. Wondering if anyone else has experience of children, young people such as above and whether in their experience they suffered from unexplained physical symptoms more so than others - or POTs , EDS or ME

So it seems odd, children with documented trauma and adverse childhoods not presenting with these - in my experience, not more than usual anyway.

Then children who are presenting with these physical symptom, rather than being belived and taken seriously and further investigated are suspected of there being a psychological origin to their suffering and parents and home life is the first thing to be met with suspision, when there is no evidence only a theory because these clinicans have been told/ taught that is the first place to look and that it is likely psychological not physical in origin.

I have no doubt that childhood trauma can have an effect on physical health, but in my experience the tends to be more accumalative and progressive and begin to effect people more in adulthood - (I am not talking about actual sustained physical injuries here).

These psychological ideas just seemed to be so ingrained now that they are just not being questioned, certainly no critical thinking is being applied and no alternative possibilities being considered.

By the way, many of these kids refused to engage with the NHS Child and Adolesent mental Health team CAHMS, they hated them found them not appropriate and didn't help and often felt they made things worse, many would just refuse to go.

 

[trishrhymes]

Great to see you here again @Mrs Sowester !

Welcome back. Great posts on AfME facebook. I've added mine to yours.

 

[A.B.]

These psychological ideas just seemed to be so ingrained now that they are just not being questioned, certainly no critical thinking is being applied and no alternative possibilities being considered.

It has become some sort of religion. A belief system that provides easy answers for difficult problems.

 

[Molly98]

@Molly98 at one point I was also a Sunday school teacher

I think I come across as perfectly respectable, if not a bit boring, in person! I'm certainly not the criminal element that is EC's latest thing, or some sort of psychopathic Wessely-esque militant extremist.

In fact I score unusually low on psychopathy, which being a psychology graduate (and not anti psychology) is the type of thing I know about myself.

I'm also now working very part time as a researcher on a chronic illness research project. I'm not anti research or science!

What I do object to is the social injustice of misinforming doctors in this way and blocking out patient voice

In that sense it's probably not a complete coincidence that those of us getting blocked have been teachers. Miseducation is very dangerous and needs to be challenged with better information.

One of the tweets they took down was something about how it is difficult for doctors when patients come in having discussed what they may have online. I can see this is a tricky change of dynamics, but overall it is positive. From something completely separate Julia Newton shared this

https://twitter.com/i/web/status/865485604598890497

Only 7% of POTS gets picked up by GPs! But 1 in 5 cases of POTS was initially spotted by the patient themselves. I self diagnosed and then got it confirmed by tests with a cardiologist. My GP hadn't heard of it and was initially sceptical but she had a decent attitude and made the referral. Afterwards she thanked me for educating her about it. I've had discussion with other pwme who (despite having diaries evidence a clear bpm POTS pattern and symptoms) have just been insulted by their GP. Since GPs are the gatekeepers to other referrals they are then blocked from diagnosis and treatment

Agree with you on all of this Jenny, your spot on. I also had same experience with regards to POTs diagnosis. Royal Devon and Exeter neurologist, once he knew I had ME, decided it was anxiety despite TTT clearly showing POTs and all the symptoms, luckily my GP had referred me to POTs specialist in Derriford Plymouth, who was excellent and whose finding totally contradicted Neurologist at Exeter and I am now receiving treatment from him and will not go back to Exeter again, they were shocking

I would like to know what they meant one one of their slides by saying POTs was the new IBS.

It is the misinformation and miseducation that I have a huge problem with also, big style.

 

[slysaint]

Hi all, just to let you know that AfME have been responding to me on the FB post about this, don't know how to do a screen shot but I'm Olivia. They replied to my comment from yesterday or the day before, (sorry time is wibbly) an hour ago about the EC trial they are funding, saying it was voted for by members. I feel I should continue the dialogue because they are still engaging, but I'm foggy!
I'll check back later

Great post!

" I think this is where the scientific and politically aware members of our community are having trouble with AfME. Esther Crawley routinely conflates ME with Chronic Fatigue and muddies the research waters. Those who have an understanding of scientific methods and good research practise have serious concerns and can poke holes in her research you could drive a coach and horses through. And, to make matters worse, she is on record being incredibly derogatory about ME patients (her recent presentation at the Nephrology Society conference for example). Patients who have followed her work, words and actions do not trust her for good reason. We would be fools to trust her. The harm she is doing is both direct and indirect. And while AfME continues to collaborate with her there will always be discord between the charity and the ME community. As your members become aware of her smearing of patients and scientists who question her research as 'anti science' I think you may find that AfME membership moves to the charities who will speak out against her, such as ME Association and Tymes Trust."

It's still there. https://en-gb.facebook.com/actionforme/

 

[charles shepherd]

Below is a reply to one of our MEA members from Dr Miles Wagstaff at the South West Paediatric Club


Dear xxxx

Thankyou for your email.

Please accept our apologies for the title of the day, which we deeply regret.

It was simply a (badly thought through) attempt to advertise the event and attract a good size audience, after all doctors always like a good acronym... to be more specific, these patients have Medically Unexplained Physical Symptoms (MUPS), so it was simply an attempt to make a 'word' out of these letters.

Clearly, our choice of word was poor. I think at the time we thought it was referring to ourselves, who often struggle to manage these patients and can appear inept... we certainly never intended offence, and I can only apologise.
I am attaching below the text of the statement released by the SWPC yesterday.

A response on behalf of the South West Paediatric Club:

"The South West Paediatric Club is extremely sorry for the offence caused by the original title we gave our conference on medically unexplained conditions today.

"This was wholly unintentional and something we very much regret. As an organisation deeply passionate about improving paediatric care, we wish to make it absolutely clear that this was in no way our description or view of the children we are proud to care for, nor our view of the complex and serious subject of medically unexplained conditions which we have gathered together today to discuss.

"The reference in the title was aimed light-heartedly at ourselves as doctors and the challenges we often face trying to successfully treat medically unexplained conditions. It was certainly not a reference to our patients. We realise that our original title was an error of judgement for which the club takes full responsibility and we have removed all reference to it in today's proceedings and it is being removed from our website.

"The conference being held today is being attended by more than 100 paediatricians from across the South West and beyond and our sole aim is to learn more about this challenging area and share best practice. We are dedicated to improving the health, wellbeing and lives of our patients and we will continue to work tirelessly to improve the standard of paediatric care for children across the South West and further afield."

Kind Regards
Miles Wagstaff

 

[slysaint]

write up on MEA website:

Paediatricians apologise but they don’t identify the “muppet” who came up with title for today’s conference | 18 May 2017

http://www.meassociation.org.uk/201...with-title-for-todays-conference-18-may-2017/

 

[Ysabelle-S]

Below is a reply to one of our MEA members from Dr Miles Wagstaff at the South West Paediatric Club


Dear xxxx

Thankyou for your email.

Please accept our apologies for the title of the day, which we deeply regret.

It was simply a (badly thought through) attempt to advertise the event and attract a good size audience, after all doctors always like a good acronym... to be more specific, these patients have Medically Unexplained Physical Symptoms (MUPS), so it was simply an attempt to make a 'word' out of these letters.

Clearly, our choice of word was poor. I think at the time we thought it was referring to ourselves, who often struggle to manage these patients and can appear inept... we certainly never intended offence, and I can only apologise.
I am attaching below the text of the statement released by the SWPC yesterday.

A response on behalf of the South West Paediatric Club:

"The South West Paediatric Club is extremely sorry for the offence caused by the original title we gave our conference on medically unexplained conditions today.

"This was wholly unintentional and something we very much regret. As an organisation deeply passionate about improving paediatric care, we wish to make it absolutely clear that this was in no way our description or view of the children we are proud to care for, nor our view of the complex and serious subject of medically unexplained conditions which we have gathered together today to discuss.

"The reference in the title was aimed light-heartedly at ourselves as doctors and the challenges we often face trying to successfully treat medically unexplained conditions. It was certainly not a reference to our patients. We realise that our original title was an error of judgement for which the club takes full responsibility and we have removed all reference to it in today's proceedings and it is being removed from our website.

"The conference being held today is being attended by more than 100 paediatricians from across the South West and beyond and our sole aim is to learn more about this challenging area and share best practice. We are dedicated to improving the health, wellbeing and lives of our patients and we will continue to work tirelessly to improve the standard of paediatric care for children across the South West and further afield."

Kind Regards
Miles Wagstaff

I spot another 'medically unexplained' in that email, taking it up to four mentions when you include the three in the original statement. It's like a bunker mentality.

 

[slysaint]

doctors always like a good acronym...

And don't we know it!

these patients have Medically Unexplained Physical Symptoms

well no they don't, and why add the extra P for Psychological ?

 

[suseq]

So a 'good' acronym is one that makes a word that provides an insider joke on the days events!

And they wonder why we are appalled by how patients and these illnesses are being grossly misrepresented and maligned.

 

[Snow Leopard]

It seems to me that terrible acronyms seems to be a British staple!!!

 

[charles shepherd]

I noticed that too. Does she mean any e-mails sent to her about the conference will be forwarded to the MEA? How odd. They are addressed to her, and by implication to her organisation, not to the MEA.
@charles shepherd, can you enlighten us.

My concern in all this is not to criticise busy paedatricians who are being sold a lot of bunkum and swallowing it uncritically.

My concern is to educate them.

Twitter is a crap medium for trying to do that. I've had a brainwave.

@charles shepherd, if I were to trawl through all the health trusts in the SW area covered by the conference yesterday and look up which of their consultant paediatricians are listed as having an interest in MUS, and send the MEA a list of names and addresses, would the MEA be able to send them all (say 2 per trust) a copy of the purple book?

I would suggest sending it with a covering letter saying something like 'Dr Crawley will not have had time in her lecture to cover all the latest research developments in ME/CFS. We have been asked to send you a copy of our book to give you and your colleagues a more comprehensive view of the most up to date information.'

Trish - Please! Before you go ahead with compiling a list of names and addresses for what might be quite a long list of hospital and community paediatricians in the South West of England I would need to discuss this proposal with MEA trustees in relation to cost

We are very happy to send a free copy of the MEA purple book (which costs us approx £8 each time to do so) out to named doctors who are dealing with someone who has ME/CFS and might well read the book

Sending out 50 or 60 copies to doctors who may not even look at it would cost us around £400 in total - and we have to consider whether this would be a wise way of spending our member's subscriptions and donations

CS

 

[dangermouse]

Thanks so much for doing that Esther

 

[charles shepherd]

I noticed that too. Does she mean any e-mails sent to her about the conference will be forwarded to the MEA? How odd. They are addressed to her, and by implication to her organisation, not to the MEA.
@charles shepherd, can you enlighten us.

I get the firm impression from my correspondence with Dr Imong that she does not want to have any further involvement with what has happened here and is therefore handing any further correspondence from members of the public over to the various people who are now dealing with it

 

[Molly98]

So a 'good' acronym is one that makes a word that provides an insider joke on the day's events!

And they wonder why we are appalled by how patients and these illnesses are being grossly misrepresented and maligned.

What they fail to understand is that it causes great offence because we are all on the receiving end of not being taken seriously and prejudice.

We all know this is how medical professionals think of us and talk about us among themselves.

We know they continually ridicule us and make fun of us and don't take us or ME seriously, we know we are a big Joke among them.

They are just embarrassed that their institutionalised prejudice and discrimination against people with a disability has slipped out publically.

It is exactly the same as institutionalised racism within the police, no different at all and until it is recognised and dealt with on an institutional level, through education and discipline where needed things will not improve. Yesterdays lectures only help to deepen the prejudice and misinformation.